Fostering transparency of biospecimen collections for brain cancer research

Part A of title IV of the Public Health Service Act (42 U.S.C. 281 et seq.) is amended by adding at the end the following: 404P. Reporting of brain tumor biospecimen collections (a) Definition of covered biospecimen collection (1) In general In this section, the term covered biospecimen collection means a biospecimen that was collected or acquired in whole or in part through funding from the National Institutes of Health. (2) Biospecimen For purposes of paragraph (1), the term biospecimen means a brain tumor tissue, cerebral spinal fluid, or other specimen type listed by the Specimen Resource Locator of the National Cancer Institute (or a successor database). (b) Establishment The Secretary, acting through the Director of NIH, may establish and maintain a searchable website, or multiple websites, which may include websites existing on the day before the date of enactment of this section, for the purpose of making accessible to the public— (1) information on the existence and location of covered biospecimen collections; (2) a description of such collections; and (3) contact information with respect to such collections. (c) Reporting requirements (1) Existing collections Any individual or entity that as of the date of enactment of this section maintains a covered biospecimen collection shall, not later than 180 days after such date of enactment, submit a report to the Director of NIH containing information with respect to such covered biospecimen collection as the Director of NIH may specify, including at a minimum the information the National Cancer Institute requires for the Specimen Resource Locator (or a successor database). (2) New collections Any individual or entity that collects or acquires a covered biospecimen collection on or after the date of enactment of this section shall, not later than 60 days after the date of such collection or acquisition, submit a report to the Director of NIH containing the information required under paragraph (1). (d) Oversight The Secretary, acting through the Director of NIH, shall establish and carry out an oversight mechanism, which shall include withholding funding to individuals or entities that have committed a repeated or egregious violation of the requirements under subsection (c)..